Sunday, December 30, 2007

I feel it necessary to note this (again), tonight--an anonymous bit that's floated around the internet for a long time.

fuck the poets of the past, my friends.there are no beautiful suicidesjust cold corpses with shit in their pantsand the end of the gifts.

But what about those of us who hang on and on, can't let go? There will likely come a day when I will have to say, no more treatment. Or there may come a day when bottles of pills may be the preferable way to avoid a death devoid of dignity. I don't suppose that's what this anonymous poet was speaking of...but there's a part of me that spends an inordinate amount of time wondering about this stuff. What happened to staying in the moment, May?

Friday, December 28, 2007

John asked me yesterday if I could name the ten most significant things (not necessarily all happy) that have taken place in my life during the past year. Here they are:

1. Getting my children back in my life.2. Watching my son Adam blossom and start to fulfill his potential.3. Watching my daughter undergo worrisome changes.4. Having the cancer metastasize beyond the bones to my liver, then going into remission due to chemo.5. Having John's atrial flutter ablation be successful.6. Moving to our beautiful new home.7. Becoming so much closer to Pat and Cathy.8. My first acceptance into a juried art show.9. Changing from a non- to an insulin-dependent diabetic.10. Feeling the ever-increasing fatigue that suggests to me I may not have as long as I had hoped to live.

Lots of small New Year's resolutions, I suppose, but the big ones are to live each day to its fullest, to try to stay in the moment, and to strive to become ripe.

Thursday, December 20, 2007

If it weren't so cloudy, I could've seen the sun rise this morning.

I woke up very early, for me, thinking about (of all things) my aphasia. Aphasia is simply the loss of the ability to speak or, in some instances, to comprehend language--your own, that is, the one you've been speaking for 22 or 47 or 75 years. It exists in varying degrees; a massive stroke, for instance, can cause complete inability to speak, whereas normal aging usually causes most of us to be unable to call up a word or two now and then.

My aphasia is caused partly by aging and menopause, but primarily by that phenomenon that used to be thought one of women's imaginary troubles, like PMS: chemo-brain. During my Adriamycin/Cytoxan followed by Taxol treatment for my primary breast tumor, in April and May of 2004, I could barely get a sentence out. I'd lose words like "car", having to say, you know, that thing you drive. (Nouns are the first to go.) I did improve after treatment ended, but I never fully recovered, and I'm noticing it worsening again on my Navelbine treatment.

"Gee! You don't sound aphasic!", you might be thinking. That's one of the things I love about writing. If I forget a word, I can use an online thesaurus, dictionary, or encyclopedia to track it down (and I absolutely did in the composing of this very post). In a conversation, I just stand there frustrated and embarrassed.

I've been fortunate to have very little of the most difficult symptoms of cancer and side effects of treatment, such as nausea and pain (though I do have significant fatigue). But I realized the other day that, having been a person who made her living advocating for others--speaking for them in various situations, such as providing testimony regarding bills that affect people with disabilities--losing my facility with words, my ability to articulate exactly what I mean--has been absolutely the hardest thing for me to handle about my "new normal", as we call it on my list for persons with breast cancer metastases.

Wednesday, December 19, 2007

"Life is wonderful, despite the side effects." ---Nancy from the bcmets list (for women with metastatic breast cancer that has spread beyond the lymph nodes)

Nancy was talking about her treatment side effects, of course, but it made me laugh.

I never wrote in to tell you that my endoscopy showed mild gastritis, nothing else. Of course. I'm a freak, I admit it. I always assume the worst. Of course I do have a terminal illness.

I received a beautiful ornament in the swap we did on CaaT (Complimentary Art and Things). Here's my gorgeous needle-felted Goddess, by Bettina Makley (fairywebmother--you can click on her website down below). All her art is wonderful!

My kids and Adam's girlfriend will be here on Christmas Eve. I'm stocked to the gills (mixed metaphor?) with hors d'oeuvres, and we'll open stockings and gifts and munch! I am so looking forward to it!

Wednesday, December 12, 2007

Here's an ACEO (baseball card size collectible art) I listed on eBay yesterday. It's an altered photo of our local reservoir, digitally collaged with a photo of the moon. I took both pics in the summer, but I thought there was nothing much I could do with them, until this occurred to me.

This one is also up on eBay. It's an ACEO of an original 5 x 7 I'm giving to a friend.

This beautiful creature was among many thistles growing in the back yard. You can see the auction here.

Hope you're all enjoying the season (a gen-yoo-wine beginning of winter here, with a nor'easter forecast for the weekend). If you live in Australia and you're roasting, I'll be thinking of you. Try thinking of me, freezing in the northeast U.S. It sometimes works.

Friday, November 30, 2007

If you look in the upper right corner of this blog's home page, you'll see that I subscribe to Sitemeter.

Sitemeter allows me to see my visitors' servers and their locations, so I can see whereabouts my readers are from, except in the case of aol, which comes from another planet. (Relax, it doesn't give me your name or even your home town, so you've got nothing to worry about.) It also tells me the search terms if you came to my site from Google.

A lot of people are looking for the meaning of the phrase "Ripeness is all". I picture students the world over swearing their way through an English paper, trying to figure out just what the bloody heck that means. That's why I post the two pages from my former blog, Ripeness is All, under the Sitemeter logo.

I'm thinking I ought to send out emails to all the English professors in the world, so they can identify plagiarized materials...and shame on you, by the way, if you're teaching students whose native language is not English, for sicking those words on them! I was an English major, elected to Phi Beta Kappa in my junior year, and I only figured it out a few years ago.

Anyway, I was reminded again of the need for that readiness this week, when my oncologist called to tell me the results of my 11/23 PET/CT. The liver and bones are still clear, and there's no sign of anything in the lungs or brain, the other common sites of breast cancer metastasis. There's just a little...spot in my stomach, probably an ulcer or gastritis, my onc said.

I flipped. I was ready to deal with a report of a new metastasis, as I had dealt pretty calmly with the news of the first spread to the liver, but I was not ready to hear this. I think he would have let it go if I had not pressed him, but when he realized how anxious I was, he promised to talk to one of Hartford Hospital's gastroenterologists. I reminded him to make sure it was one who accepted Medicaid so I could avoid the fiasco that occurred earlier this year when I was looking for an endocrinologist (my blood glucose was over 300 and it took me two months to get an appointment).

I got a call the next day from the gastro, and I have an endoscopy set up for December 7th. In case you don't know, that's where they stick a tube with a little camera down your throat and look at the inside of your stomach, remove land mines, and biopsy any questionable areas. So I'll know for sure. I'm much better when I know for sure.

I'm embarrassed and sorry that I wrote a rather self-pitying email to the main breast cancer email list and the breast cancer metastasis list. I came to my senses the next day. The fact is that it's unlikely to be cancer, and the other fact is that I'll simply have to deal with it if it is.

Tuesday, November 20, 2007

John's hand curls around mine like a peace lily. He's in some kind of arrhythmia, and I know he's worried that this means his surgery has failed.

The meager light that strays into the bedroom allows me to make out the faint light of the ceiling fan, which looks like a giant stylized daisy above the bed. The darkness sparks and twinkles with dark blue and spots of other colors. The night always has colors for me.

I make myself rise up toward the ceiling. I'm reminded of the time I took a trip with a boyfriend to Montreal on the train, sleeping on the tiny top bunk in the sleeper car. It took a bit of Xanax to get me through that; another boyfriend's tiny trailer had given me claustrophobia for life.

The night bedroom is not claustrophobic for me. John is my friend, and gives me freedom. The darkness allows me to see things that are obscured in daylight.

I have wondered if I will pass into death as peacefully and happily as I pass into sleep. It could happen. But on nights like this, I will drink in the insomnia, and hope.

Sunday, November 18, 2007

I haven't written in quite some time. That's because every time I think about it, I come to the conclusion that I have nothing much to say.

But today was different. One exciting thing and one rather bizarre thing happened.

John went to Meriden yesterday to pick up the new pellet stove we bought on Friday. We couldn't bring it home on Friday because he's recuperating from a pretty successful atrial flutter ablation; one of the men at the shop was using crutches, because he'd had a spinal cord injury; and the other man had had three strokes. And I wasn't about to try lifting a 300-pound stove. Anyway, one of the shop guys told John that the rumor that there was an old Nike missile site in Mashomaset State Forest was true. So we took a ride through the forest to the Glastonbury edge of the woods.

This fellow had given John some rather vague directions, and we weren't able to find any of the landmarks he mentioned on the dirt road we usually take through the forest. So we looked at our Connecticut atlas and decided to try another road in.

The man had mentioned that there would be a bunch of chunks of concrete near a gate to a path off the dirt road. We finally found such a place and decided to go in.

One of the first things we found was two concrete slabs, parallel to each other and about eight feet apart, with curves in the center that would be perfect for holding the rather slender Nike missile as it is unloaded from a truck. John took a picture of me sitting in the center of the front slab:

If I look grim, well, you might understand why, at least if you remember the Cold War.

We then followed a path, some of which was paved, back a little ways into the woods. It was bordered by rusty barbed wire. On the way, we passed a couple of spots with what looked like eight-inch square linoleum tile on it. Finally we came to a large area with a slab of concrete, which had been covered by a hill of wood chips that seemed to have something else, possibly dirt, under it. There were heavy duty metal pipes that seemed to lead underground. At various spots around, there were more areas of tile, but no buildings were visible.

John took several pictures, but it was close to dark and cold, so we headed back. When I got home I read that there are several abandoned missile sites in Connecticut, including one on the Metacomet Trail in Farmington. The one in Glastonbury is noted as having all associated buildings razed. Suddenly I can't wait for spring!

Oh, but wait--I'm not done. Shortly after we got in the car to head home, the car heat thawed out my nose and I noticed it was tickling. I put my thumb in a tissue and reached in to scratch it and pulled out--a tick. A whole medical mystery plot came to mind.

All the way home, I was surreptitiously sticking Kleenex up my nose, endeavoring to make sure that Mrs. Tick had not brought her extended family with her. I think I'm going to be all right. I must be; I listed a new photo on eBay tonight. Here it is:

If you're interested in seeing the auction, you can click here. I'm cheap.

Saturday, November 3, 2007

Several people--well, okay, one person--has noticed that I haven't been posting much lately. I went through a very tough few weeks. After getting through the time when my daughter was in the hospital, and cars were breaking, and all that, I simply collapsed. I curled up in my bed in the fetal position and lay there feeling hopeless.

I'm feeling better now. This morning brought a bit of it back, however...I was going through my email and there was a notice from the Hygienic Art Gallery that submissions for the Holiday Show had to be in by November 11th. This post was a "correction" to the date previously emailed to past participants; I had not received that post, however, so this one was the first I'd heard about the show. I immediately began panicking--what should I do, how will I have it ready in time, that sort of thing. Then I remembered that I'm already overcommitted and behind on things, and of course I had to beat up on myself a little more for that. It didn't help that it was a cold rainy day, exactly the kind of November day I dislike the most.

Why do I have to hang on to this guilt and self-hatred? I believe that behavior is purposeful, and I'm no exception to that rule. Lots of food for thought...

As a child, I was not allowed to express or even show anger. My parents got very angry with me for being angry. That meant I had to be guilty and a very bad person instead, and I'm still following the same old pattern.

Sigh...you'd think I would have outgrown that, at almost 56--and that I'd give myself a break, now that I have a terminal illness!

Sunday, October 21, 2007

Rode to and from work on Friday in waves of rain. The trees were so red that your heart would bleed if I could tell you. The yellows were like sunshine from another land, and the oranges talked persistently of harvest.

No, I have not lost my mind. Or perhaps I have. At this time there is no me, really just a suggestion of a universe to come. I accept.

In the background is McLachlan singing Adia: "We are born innocent--believe me Adia, we are still innocent...it's easy, we all falter, but does it matter?" In the long run, when the earth crashes into the sun, or spins out into outer space where there is no air, or the aliens come to take over the earth because we've trashed it, and we are condemned to board their spaceship and be transported to the outer reaches of hell...no. It doesn't matter.

But in the heart, where I happen to hold all the burdens that will fit (though I think it may burst)...yes. It does matter.

Last night I had an odd sort of--well, I described it to John as a fantasy, but it was really more of a waking dream. I was lying in a hospital bed, close to death, and John and some others came into my room with Dr. Schauer, who told me a new chemo had been developed, a very different kind of chemo, and they were going to give it to me. They started to infuse this chemo into my veins, and I lifted up just slightly out of my body, and I thought, it's a joke. So I said to Dr. Schauer, if this is dying, bring it on. But he insisted, in that nice way he has, that it was not a joke, and we were really hoping it would work. John and the others were chuckling at my reaction, but they also kept encouraging me. I felt as though I were lying on a magic carpet, and the most wonderful serum was flowing through my veins, the way air flows through your lungs into your veins in life, but I was dying, to be reborn, to something totally new. And I floated...

Crazy? Denial? I don't think so. Will I die soon? I don't know, but I'm doing well right now. I just want to fix all the things I did wrong in life, and that's one burden too many. I never learned the first lesson: take care of yourself. I am learning it now, too late.

Sunday, October 14, 2007

Without an audience to write for, I don't seem to be able to get close to the truth. You'd think it would be the other way around, but I can only be really honest when I have at least a theoretical audience. Journaling seems pointless to me.

On the other hand, while my site counter reminds me that the whole world doesn't have me bookmarked, there are some things that seem inappropriate to write about publicly. What happened to my daughter over the past month is one of them. I have no right to bare her experiences to the world.

And yet...there's a line--a very thin one--and I'd like to try to find it, difficult as that may be.

Many people in the world, including both me and my daughter, have emotional illnesses or disabilities. Mental illness carries a heavy stigma, and while psychiatric disorders know no class, they tend to disable and impoverish individuals, and so they are associated with homelessness, lack of cleanliness, lack of intelligence, etc., etc., etc. That's why those who have high-level careers hide them. But until everyone can hold his or her head up high and declare that they have a psychiatric disability in the same way they might mention they're an insulin-dependent diabetic--without shame--that's not going to change.

But I didn't start this post to give a lecture on stigma. I just wanted to say that my daughter's been through a very tough time, and I wasn't doing very well myself this past month. The sh-t fairy dropped by, and a whole bunch of stresses happened at the same time, and now I'm trying to recover. I've started using the SAD (seasonal affective disorder) light in the morning (click here to learn about SAD and light therapy). It seems to help. The stresses have lightened as well (all cars are running and my daughter seems to understand what she needs to do to get better). I finally had my appointment with an endocrinologist, and he's started me on insulin. He gave me a choice--that or one of the old oral diabetes meds, which I think are very bad drugs--so I picked insulin. The needles are tiny and very thin, and the insulin (12 units of Lantus long-acting) is not irritating, so it's no big deal. I've given myself three injections so far, and I barely felt them.

I'm supposed to go up on the dose 2-4 units every several days until I see better control than I have now. (It's nice when a doctor treats you like you have a brain.) I'll wait a week the first time, to allow the blood level to stabilize, then probably go up four, since I'm hardly seeing any change at all after three shots. The endocrinologist also seemed to think I was on too high a dose of Metformin. He ordered kidney tests, which my oncologist does frequently anyway, but I have the feeling he might suggest at some point substituting more insulin for the Metformin. Perfectly fine with me. I hate taking all the pills I have to take.

Well, if you've gotten this far, bless you. And may the Red Sox continue to play, all the way to the world series. If you'd like to read something about baseball, instead of all the crap I've been posting tonight, click here. And if Terry Francona happens to read this blog, I'd just like to say: I hope for your sake that all that bright pink gum is sugarless. Otherwise--wow. Some dentist is going to get rich on you.

Oh! One more thing I almost forgot. I got two blue ribbons and two red ribbons for my photos at the Portland Fair. Of course, everyone else got either a blue or a red as well. I mentioned that to the nice lady who chairs the photo exhibit committee, and she said, "Yes! We really got a lot of good photos this year". It's kind of like every kid getting to be student of the month, even if he farts at the teacher and spits in your lunchbox. Those ribbons must be one of those "inalienable rights" our Declaration of Independence so aptly described. Anyway, I won $18. So I guess it was all worth it. Plus I have four Christmas gifts ready now.

Tuesday, October 9, 2007

Question: if you have three cars, how many can break down at one time?

Don't tell me that. So far it's only two.

I took these two photos in August, before the leaves started turning. The photo on top is of the East Haddam Bridge over the Connecticut River. The bottom picture is of the Goodspeed Opera House and the Gelston House Restaurant, which are just to the right of the visible end of the bridge in the top photo. I walked across the East Haddam Bridge many times during youth and adult Camp Bethel campmeeting weeks in the summers of my childhood. Sometimes the man who opened the bridge for boats too tall to go under it would give us a ride on the opening bridge. At night, huge spiders would come out. I preferred walking across during the daytime.

Saturday, October 6, 2007

...the sad, sad story of why I have a new blog, check out the last couple of posts on my old one, "Ripeness is All". In fact, you might have to in order to make the title of this one make any sense :>)

Anyway, I've changed from black dotted to white nuthin', but I'll fill it with all kinds of pictures--you'll see! I asked my partner his opinion, and he said it's hard to read white on black for a long time. So here I am with this wonderful minimalist white.

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WANT TO KNOW WHAT I THINK "RIPENESS IS ALL" MEANS?

About Me

I'm just a middle-aged peasant from the wilds of Connecticut. I like my love John, music, art, cats, and bittersweet chocolate. I have metastatic breast cancer, which is incurable, so I'm usually in a big hurry to live. I take the slow lane only, though. I don't want to get hit by the proverbial bus!

~~~~~~~~~~~~~~When the time comes, I give up life without regret to feed a spirit greater than mine. I shall die, a small thing become part of the larger world. May we live forever and forever. May the light shine through us and on us and in us. May we die each night and be born each morning that the wonder of life should not escape us. May we love and laugh and enter lightly into each other's hearts.May we live forever. May we live forever.

---Awakening Osiris (The Egyptian Book of the Dead), translated by Normandi Ellis